It's been five days since my last post, with some days being more difficult than others. We are all adjusting to a new daily routine which includes Mark and medical appointments. Mark has been doing so incredibly well with his physical healing, now totally off any pain medication. But sleep seemed to be his nemesis.
As each day passed, his moods and patience level didn't seem to improve by very much. I took this to be his lack of sleep at night. Mark has always been a keen sleeper and always liked to be in bed on time, while I would quite happily stay up and burn the midnight oil. A lack of sleep would most often result in a grumbly bear the next day. So we decided it best if he took a sleeping tablet. I gave him one that I have used in the past, an over the counter pill in which you can take a dose of 1-2 tablets an hour before going to sleep. I gave him a half a tablet, quite a bit lower than the recommended dosage. Well, he slept alright, but was groggy and foggy the next day, which didn't really help at all.
By now he had become really distant and was starting to show signs of depression. I asked him if he felt angry about everything that had happened and he agreed that he probably did. That morning after breakfast we went for a short walk and while Sebastian and Else ran along the creek path, we talked. I was starting to unravel myself and felt it hard to go on each day. Then I got mad and started to point out all the positives in our situation. Financially we are ok, it's stage 3 not 4, it's treatable and beatable and damm it, we have a son who needs us both and it's time to stop wallowing in self-pity. This was a time to embrace all the "spare time" and do the things that he would always complain he didn't have enough time to do. Ride your bike, read your magazines, write some code, play some games and walk the dog in this beautiful sunshine.
By now I could see that he needed some male company as each visitor we had since he returned home was either female, a family or couples. He needed male company, not to talk about the disease or what treatment he was having, but to talk blokey things and just hang out.
I made a call to the chemo doctor to discuss his next appointment and I mentioned his medications and asked for clarification. He advised me that Mark should start to reduce one of the medications used for reducing swelling and fluid as he needed to be clear of this drug before starting the chemo trial. That night Mark went without this drug and finally a better night sleep was experienced, and a new Mark emerged.
It's Wednesday now and today was a real breakthrough. It's the little things that get me excited, like him making a pot of tea for me, putting out the rubbish or offering to give Sebastian a shower and read stories, all without being asked or prompted. This is huge as until today, he had not shown any interest in any daily chores or activities. While this may be quite normal for some husbands, our relationship works on a much different level. Neither of us would usually relax until everything was done, put away and in its place, a daily team effort. Up until today, this had been my total responsibility and it was starting to take its toll.
So now I feel much more hopeful that things will start to improve. I have found some yoga and meditation classes as well as specialised cancer counselling and cancer healing and wellness courses. With the problems at my work now finally fixed and support research completed, I feel I can finally breathe a sigh of relief and have a feeling of being on top of everything, for the first time since Mark was taken away in an Ambulance just two and a half weeks ago! OMG, it seems like a lifetime ago!
Wednesday 31 October 2012
Friday 26 October 2012
Post Number 6 - The Home Coming
It's now Friday and Mark has been home since Wednesday afternoon. Sebastian and I were so very excited to bring Daddy home as we had both worked tirelessly the night before to make everything spick and span. Sebastian swept and cleaned, emptied the dishwasher and packed away toys. We ate dinner at 8pm and Seb never complained that dinner was 2 hours late!
Next day, Seb and I attended swimming lessons first as I knew it would take some time before the hospital would have everything ready for Mark to leave. We waited for what seemed to be an eternity until finally everything had been finalised, his staples removed, medication allocated and Radiotherapy booked. It was time to go home after 12 long days in hospital!
The walk to the car was a short one, as was the drive home. We pulled up in the carport and decided to enter the house via the back door as there are only a few steps to manage. Mark seemed unusually quiet and the excitement of coming home seemed to disappear. We went inside and we showed him his new healing haven. He nodded and smiled but said little. I made us all some lunch and then put Sebastian down for his afternoon sleep. Mark still distant, he also decided to have a lie down in his new room.
The house was quiet and I didn't hear from either of the boys all afternoon. I worked frantically on paying bills and sorting out various other affairs until nearly 4.30pm when Sebastian finally awoke from his deep afternoon nap with Mark surfacing half an hour later. He explained that he had the deepest two hour sleep that he had had in weeks and I hoped he would feel a little better and be a little brighter.
The boys went outside and played with remote control cars but it was not long before Mark wanted to rest and take a break. I made dinner and heard Mark tell Sebastian that he needed rest. He seemed a little short tempered with Sebastian which confused him as it is normally me with the short fuse, with Mark being the calming force in our household.
Next day saw Mark feeling much better although still a little snappy. It was Sebastian that seemed to get the brunt of it as he was the one acting out and constantly demanding things and whining which was getting on both of our nerves. Mark asked me later that morning if I noticed anything different about him and I told him that I had noticed his fuse was a little shorter than normal. He was deeply concerned as he also felt this and knew that it was wrong. The fact that he recognised it assured me that this was only short term. That night however, our sensitive and acutely aware little boy sobbed when I put him to bed. He told me that Daddy was making him sad and I comforted him and told him that every day, Daddy was getting a little bit better and we just need to be strong, hang in there and listen to what Daddy needs.
That night, I had trouble sleeping after falling asleep in front of the television. Every time I would start to fall asleep, Sebastian would wake me, either by calling out in his sleep or calling me because he was feeling unwell. It was a very long night and I managed only a few hours sleep. By 7.30am, Mark strutted in, showered, shaved and dressed, ready for breakfast, with me still in bed struggling to get up. He told me he was feeling good after a restful night and while I dragged myself into the shower, he set about getting breakfast organised. I felt relieved that he was starting to do homely things and yet guilty that he felt he needed to.
After breakfast we headed into the city to take Sebastian to Daycare. As we walked up the street, he yelled at the top of his voice, "I don't want to go to the Manor, I want to stay home". Once inside he clung on tight and cried and cried. Usually quite content at daycare, no amount of talking to him would calm him down. He screamed and yelled at us and eventually we had to walk away and wave to him through the window, watching him sob. It was gut wrenching but we had to leave as we had a full day of appointments to attend.
Later that morning we stopped in at the Credit Union where Mark worked and we seemed to have somewhat of a celebrity status. More and more people gathered around Mark to see if he was really ok, to marvel in how quick he was recovering and see the scars of his surgery. I received countless comments about my blog and how so many people felt comfort in reading about how well Mark was handling all that had happened to him. I now have a better understanding of how many people really care about Mark and how many men have been brought to tears reading about his courage and strength. It's true, his courage is to be admired, but we both know that we can only look forwards and there is no time for the "whys" and "hows", only "what do we need to do to beat this?"
An afternoon appointment saw us back at the Flinders for a discussion regarding an experimental chemo drug. We had previously been told that Chemo was not an option for his type of tumour, however, the radiologist immediately saw him as a potential client to go on this drug trial. We discussed the drug and it's side effects and it was an easy decision to sign up for the trial. Tissue samples of the tumour would be retrieved and be sent off to a central lab in Europe to test if Mark's tumour would be accepting of this drug which had seen some positive results in Stage 4 tumours.
So now we wait. Wait for test results to see if he qualifies for the drug and wait for Mark to heal fully before starting radiation therapy. I am so pleased to see how radically different each day is. His moods are better each day, he is feeling stronger each day, the weakness in his left side is going away, his head is tingling as things heal and nerve endings rejoin. Tomorrow we begin some exercise, a walk to the oval (around 4 blocks away) where we usually do our jogging, and while he is under strict instructions (by me) NOT to jog, he can walk or simply enjoy the fresh air and sunshine while I do the hard yards!
Next day, Seb and I attended swimming lessons first as I knew it would take some time before the hospital would have everything ready for Mark to leave. We waited for what seemed to be an eternity until finally everything had been finalised, his staples removed, medication allocated and Radiotherapy booked. It was time to go home after 12 long days in hospital!
The walk to the car was a short one, as was the drive home. We pulled up in the carport and decided to enter the house via the back door as there are only a few steps to manage. Mark seemed unusually quiet and the excitement of coming home seemed to disappear. We went inside and we showed him his new healing haven. He nodded and smiled but said little. I made us all some lunch and then put Sebastian down for his afternoon sleep. Mark still distant, he also decided to have a lie down in his new room.
The house was quiet and I didn't hear from either of the boys all afternoon. I worked frantically on paying bills and sorting out various other affairs until nearly 4.30pm when Sebastian finally awoke from his deep afternoon nap with Mark surfacing half an hour later. He explained that he had the deepest two hour sleep that he had had in weeks and I hoped he would feel a little better and be a little brighter.
The boys went outside and played with remote control cars but it was not long before Mark wanted to rest and take a break. I made dinner and heard Mark tell Sebastian that he needed rest. He seemed a little short tempered with Sebastian which confused him as it is normally me with the short fuse, with Mark being the calming force in our household.
Next day saw Mark feeling much better although still a little snappy. It was Sebastian that seemed to get the brunt of it as he was the one acting out and constantly demanding things and whining which was getting on both of our nerves. Mark asked me later that morning if I noticed anything different about him and I told him that I had noticed his fuse was a little shorter than normal. He was deeply concerned as he also felt this and knew that it was wrong. The fact that he recognised it assured me that this was only short term. That night however, our sensitive and acutely aware little boy sobbed when I put him to bed. He told me that Daddy was making him sad and I comforted him and told him that every day, Daddy was getting a little bit better and we just need to be strong, hang in there and listen to what Daddy needs.
That night, I had trouble sleeping after falling asleep in front of the television. Every time I would start to fall asleep, Sebastian would wake me, either by calling out in his sleep or calling me because he was feeling unwell. It was a very long night and I managed only a few hours sleep. By 7.30am, Mark strutted in, showered, shaved and dressed, ready for breakfast, with me still in bed struggling to get up. He told me he was feeling good after a restful night and while I dragged myself into the shower, he set about getting breakfast organised. I felt relieved that he was starting to do homely things and yet guilty that he felt he needed to.
After breakfast we headed into the city to take Sebastian to Daycare. As we walked up the street, he yelled at the top of his voice, "I don't want to go to the Manor, I want to stay home". Once inside he clung on tight and cried and cried. Usually quite content at daycare, no amount of talking to him would calm him down. He screamed and yelled at us and eventually we had to walk away and wave to him through the window, watching him sob. It was gut wrenching but we had to leave as we had a full day of appointments to attend.
Later that morning we stopped in at the Credit Union where Mark worked and we seemed to have somewhat of a celebrity status. More and more people gathered around Mark to see if he was really ok, to marvel in how quick he was recovering and see the scars of his surgery. I received countless comments about my blog and how so many people felt comfort in reading about how well Mark was handling all that had happened to him. I now have a better understanding of how many people really care about Mark and how many men have been brought to tears reading about his courage and strength. It's true, his courage is to be admired, but we both know that we can only look forwards and there is no time for the "whys" and "hows", only "what do we need to do to beat this?"
An afternoon appointment saw us back at the Flinders for a discussion regarding an experimental chemo drug. We had previously been told that Chemo was not an option for his type of tumour, however, the radiologist immediately saw him as a potential client to go on this drug trial. We discussed the drug and it's side effects and it was an easy decision to sign up for the trial. Tissue samples of the tumour would be retrieved and be sent off to a central lab in Europe to test if Mark's tumour would be accepting of this drug which had seen some positive results in Stage 4 tumours.
So now we wait. Wait for test results to see if he qualifies for the drug and wait for Mark to heal fully before starting radiation therapy. I am so pleased to see how radically different each day is. His moods are better each day, he is feeling stronger each day, the weakness in his left side is going away, his head is tingling as things heal and nerve endings rejoin. Tomorrow we begin some exercise, a walk to the oval (around 4 blocks away) where we usually do our jogging, and while he is under strict instructions (by me) NOT to jog, he can walk or simply enjoy the fresh air and sunshine while I do the hard yards!
Tuesday 23 October 2012
Post Number 5 - The Lab Results
A few more days of miracle healing have passed and with talk of an early release from hospital, spirits are moving upward. The agonising wait for lab results needed much distraction. Sebastian and I visited often and took him out of his room to get fresh air and some exercise. He would walk some of the way and then hop into the wheelchair with Sebastian perched up front and me pushing from behind. The fresh air and frequent visits seem to help, but the unknown results continued to loom over our heads like a black cloud.
I began giving Mark little tasks to do to help train his brain and also occupy him. I know I am no professional, but I hoped it would help with his confidence or find out what he needed to work on to recover what he might of lost from surgery.
Some word games saw him a little slow at first, but then each game following saw him make more and more words. He beat me at Noughts and Crosses and proved he could write words both forwards and backwards. I asked him to explain the steps in how to make a brewed coffee which he easily told me. He was amazing and I could find no fault. As I left, I gave him some homework to build an item from Sebastian's mechano set, following the steps in the booklet, and sure enough, that night, he sent me a photograph of the finished product, perfectly built.
I asked Mark if he would like to see some "mates" as I thought it might help for him to see some other men rather than just Sebastian and I. He agreed and it was organised. I believe he enjoyed the visit and the boys found a way to have a few laughs. But the black cloud was still hanging above.
I also went out that evening to meet a friend who I had not seen in two years as she had moved to Queensland. It was such a luxury to get out of the house alone and meet up in Rundle Street. We talked and talked and I felt we could have talked all night. She is a special friend who thinks in a similar way to me and she seems to understand me well without judgement. She had also been through some tough times recently and it was hard to say goodbye. But the evening helped to recharge me and the next morning I felt strong both physically and mentally.
Sebastian and I arrived at the hospital early again so that we could tell the doctors that we wanted our Daddy home right now!! But we were too late as the doctors had arrived very early to deliver the news we didn't want to hear. It was a stage 3 tumour with stage 4 being the worst and most aggressive. Radiation therapy would be required, with chemo therapy not likely as this type of tumour generally does not respond to chemo. He would need to have the radiation every day (Mon-Fri) for 6 weeks straight. Then 6 weeks of healing, then another MRI scan to see how it all looks.
Wow...everyday for 6 weeks! That's a lot isn't it? I don't know, I have never known anyone going through this. We shed a few tears but we both felt so strong that they were short lived. We had each other, our bodies fit and healthy and minds focused on the task at hand. Mark looked at me with a look of love and a pillar of strength and said, "Ok, Bring it on!" I smiled and squeezed his hand, so proud of this man I married.
Sebastian and I left the hospital to continue with our routine of Kindermusik. While he danced and laughed, I rang family, texted neighbours and posted the news on Facebook. With Sebastian's activity over, I left him with his best mate and returned to the hospital.
After lunch we went for a walk, this time, without a wheelchair. This man was fighting fit and ready to go for a hike! We headed downstairs to the little park area but he wanted to walk more, so down the steps, up the steps, through a staff carpark and up the road we went, up and up the hill. He was walking strong and not breaking a sweat and even I was puffing a little walking up the hill. I heard my phone receive a message and I saw a lovely shady tree just ahead and suggested we sit under the tree for a while and rest! It was lovely just being right away from the hospital and from stupid sick people who were smoking. I mean, what has to happen before they will give it up??
We chatted and planned and enjoyed the sunshine. I told him I would set up in the guest rooms for him so he could have peace and quiet, his own bathroom, and his own living room. This way he could rest when he needed and have visitors or mates over and they can talk blokey things and watch TV or play playstation or even have a jam session with guitars and keyboards. It would be his own man pad and recovery centre.
That afternoon, as Sebastian slept, I went about creating the "man pad", all the while thinking I had a couple of days to finish it. But then I received a text from a very happy Mark to say he was being released tomorrow and the staples could be removed by a GP!! OMG...that was awesome. I scrubbed and tidied up and cleaned and changed sheets and made those rooms look and feel comfortable, inviting and uncluttered. I can't wait to bring him home and cook him the healthy fresh meals that I know he loves. I want to fuss over him and spoil him and love him til he can't take it anymore and I believe he can't wait to be fussed over!!
I began giving Mark little tasks to do to help train his brain and also occupy him. I know I am no professional, but I hoped it would help with his confidence or find out what he needed to work on to recover what he might of lost from surgery.
Some word games saw him a little slow at first, but then each game following saw him make more and more words. He beat me at Noughts and Crosses and proved he could write words both forwards and backwards. I asked him to explain the steps in how to make a brewed coffee which he easily told me. He was amazing and I could find no fault. As I left, I gave him some homework to build an item from Sebastian's mechano set, following the steps in the booklet, and sure enough, that night, he sent me a photograph of the finished product, perfectly built.
I asked Mark if he would like to see some "mates" as I thought it might help for him to see some other men rather than just Sebastian and I. He agreed and it was organised. I believe he enjoyed the visit and the boys found a way to have a few laughs. But the black cloud was still hanging above.
I also went out that evening to meet a friend who I had not seen in two years as she had moved to Queensland. It was such a luxury to get out of the house alone and meet up in Rundle Street. We talked and talked and I felt we could have talked all night. She is a special friend who thinks in a similar way to me and she seems to understand me well without judgement. She had also been through some tough times recently and it was hard to say goodbye. But the evening helped to recharge me and the next morning I felt strong both physically and mentally.
Sebastian and I arrived at the hospital early again so that we could tell the doctors that we wanted our Daddy home right now!! But we were too late as the doctors had arrived very early to deliver the news we didn't want to hear. It was a stage 3 tumour with stage 4 being the worst and most aggressive. Radiation therapy would be required, with chemo therapy not likely as this type of tumour generally does not respond to chemo. He would need to have the radiation every day (Mon-Fri) for 6 weeks straight. Then 6 weeks of healing, then another MRI scan to see how it all looks.
Wow...everyday for 6 weeks! That's a lot isn't it? I don't know, I have never known anyone going through this. We shed a few tears but we both felt so strong that they were short lived. We had each other, our bodies fit and healthy and minds focused on the task at hand. Mark looked at me with a look of love and a pillar of strength and said, "Ok, Bring it on!" I smiled and squeezed his hand, so proud of this man I married.
Sebastian and I left the hospital to continue with our routine of Kindermusik. While he danced and laughed, I rang family, texted neighbours and posted the news on Facebook. With Sebastian's activity over, I left him with his best mate and returned to the hospital.
After lunch we went for a walk, this time, without a wheelchair. This man was fighting fit and ready to go for a hike! We headed downstairs to the little park area but he wanted to walk more, so down the steps, up the steps, through a staff carpark and up the road we went, up and up the hill. He was walking strong and not breaking a sweat and even I was puffing a little walking up the hill. I heard my phone receive a message and I saw a lovely shady tree just ahead and suggested we sit under the tree for a while and rest! It was lovely just being right away from the hospital and from stupid sick people who were smoking. I mean, what has to happen before they will give it up??We chatted and planned and enjoyed the sunshine. I told him I would set up in the guest rooms for him so he could have peace and quiet, his own bathroom, and his own living room. This way he could rest when he needed and have visitors or mates over and they can talk blokey things and watch TV or play playstation or even have a jam session with guitars and keyboards. It would be his own man pad and recovery centre.
That afternoon, as Sebastian slept, I went about creating the "man pad", all the while thinking I had a couple of days to finish it. But then I received a text from a very happy Mark to say he was being released tomorrow and the staples could be removed by a GP!! OMG...that was awesome. I scrubbed and tidied up and cleaned and changed sheets and made those rooms look and feel comfortable, inviting and uncluttered. I can't wait to bring him home and cook him the healthy fresh meals that I know he loves. I want to fuss over him and spoil him and love him til he can't take it anymore and I believe he can't wait to be fussed over!!
Saturday 20 October 2012
Post Number 4 - The Healing
Today is Saturday, two days after the surgery. Mark's swollen and bruised face has all but gone down completely, which is amazing in itself!
Yesterday I decided to wait another day before taking Sebastian in to see his father. I didn't want him to get scared and I thought a little more time would make all the difference. By now however, Sebastian was starting to act out and was calling for his daddy a lot more. A first planned sleepover changed to me bringing him home and putting him to bed. It's so hard. I don't want him to be upset or add more stress to his already confusing little life.
By the time I got to the hospital it was quite late in the evening and Mark seemed a little down. We talked about pain levels and the type of pain medication he was on as I could not understand why he was only on Panadol a day after surgery! He had not had any real sleep or rest so I decided I would talk to the nurses and find out what we could do. A short conversation later and his medication was changed to a higher dose of pain meds which he was allowed to have every two hours. Satisfied that he would now get a chance to rest, I kissed him goodnight and promised to be back in the morning to help him have a shower.
With an early morning play date arranged, Sebastian and I made pancakes, leaving one aside to take to Daddy. With a promise I would take him to see Daddy later that morning, I left him with a neighbour and headed in to hospital.
When I arrived, the nurse was changing the dressing on the wound which travels from one ear to the other. His head was covered in staples and I joked that he looked like the character out of Robo Cop. Or at least I said, "some movie with a robot", and he said, "Oh, you mean Robo Cop". The swelling had gone down quite a bit and he was looking much better as he did get some rest overnight. The showering went well using the shower chair with me only scrubbing his back and holding the water for him. I helped him into some clothes and gave him his shaver and he was beginning to look normal again.
I then went home to pick up Sebastian. We cut some beautiful roses from the garden and grabbed some cream for Mark's lips, the pancake that we had prepared earlier and we were off. On the way I told Sebastian that Daddy may look a little funny, but he is still the same Daddy we know and love. He handled it really well and although he was a little stand offish, he happily gave his Dad a hug.
With his family members together, I grabbed a wheelchair and we set off to feed some ducks and get Mark some much needed fresh air. We only stayed in the courtyard a short time, and Mark seemed to enjoy feeding the ducks himself as well as watching Sebastian. He said he was ready for a real coffee, so we wheeled him over to the cafe' for the real thing.
The whole adventure seemed to tire Mark and he was soon ready to head back inside, his lunch awaiting him. We stayed a little longer but once he had eaten his lunch we left him to rest for the afternoon. The family then returned home where we all had lunch together and I had a much needed opportunity to do some grocery shopping.
After a simple dinner of BBQ sausages and store bought salad, the family headed off first to see Mark with me following once Sebastian had settled in to bed (which seemed to take forever). By the time I arrived, Mark was already getting ready for bed. I stayed with him a short while but he seemed really tired and when I asked him if I should leave, he said yes.
On the way out I noticed some maps of the brain and descriptions of what the various parts of the brain do. Right Frontal Lobe; Mood, Social Interactivity, Decision Making, Evaluation of Environment and something else about the sequence of a task, like making a cup of coffee. So far I cannot tell if there are any differences or changes as he seems a unhappy, distracted and bored. He asked for some electronic devices to be brought back and I guess I should be pleased. But I am so unsure and I hate that he is there bored and I want him here where I could look after him and spend more time with him as well as give him rest periods with quietness.
He is in a shared room now and this would only add to his depression. I only hope that this is a short term thing and that with some good news from doctors, a connection to the Internet and a healed body, he will bounce back and give me a genuine smile.
Yesterday I decided to wait another day before taking Sebastian in to see his father. I didn't want him to get scared and I thought a little more time would make all the difference. By now however, Sebastian was starting to act out and was calling for his daddy a lot more. A first planned sleepover changed to me bringing him home and putting him to bed. It's so hard. I don't want him to be upset or add more stress to his already confusing little life.
By the time I got to the hospital it was quite late in the evening and Mark seemed a little down. We talked about pain levels and the type of pain medication he was on as I could not understand why he was only on Panadol a day after surgery! He had not had any real sleep or rest so I decided I would talk to the nurses and find out what we could do. A short conversation later and his medication was changed to a higher dose of pain meds which he was allowed to have every two hours. Satisfied that he would now get a chance to rest, I kissed him goodnight and promised to be back in the morning to help him have a shower.
With an early morning play date arranged, Sebastian and I made pancakes, leaving one aside to take to Daddy. With a promise I would take him to see Daddy later that morning, I left him with a neighbour and headed in to hospital.
When I arrived, the nurse was changing the dressing on the wound which travels from one ear to the other. His head was covered in staples and I joked that he looked like the character out of Robo Cop. Or at least I said, "some movie with a robot", and he said, "Oh, you mean Robo Cop". The swelling had gone down quite a bit and he was looking much better as he did get some rest overnight. The showering went well using the shower chair with me only scrubbing his back and holding the water for him. I helped him into some clothes and gave him his shaver and he was beginning to look normal again.
I then went home to pick up Sebastian. We cut some beautiful roses from the garden and grabbed some cream for Mark's lips, the pancake that we had prepared earlier and we were off. On the way I told Sebastian that Daddy may look a little funny, but he is still the same Daddy we know and love. He handled it really well and although he was a little stand offish, he happily gave his Dad a hug.
With his family members together, I grabbed a wheelchair and we set off to feed some ducks and get Mark some much needed fresh air. We only stayed in the courtyard a short time, and Mark seemed to enjoy feeding the ducks himself as well as watching Sebastian. He said he was ready for a real coffee, so we wheeled him over to the cafe' for the real thing.
The whole adventure seemed to tire Mark and he was soon ready to head back inside, his lunch awaiting him. We stayed a little longer but once he had eaten his lunch we left him to rest for the afternoon. The family then returned home where we all had lunch together and I had a much needed opportunity to do some grocery shopping.
After a simple dinner of BBQ sausages and store bought salad, the family headed off first to see Mark with me following once Sebastian had settled in to bed (which seemed to take forever). By the time I arrived, Mark was already getting ready for bed. I stayed with him a short while but he seemed really tired and when I asked him if I should leave, he said yes.
On the way out I noticed some maps of the brain and descriptions of what the various parts of the brain do. Right Frontal Lobe; Mood, Social Interactivity, Decision Making, Evaluation of Environment and something else about the sequence of a task, like making a cup of coffee. So far I cannot tell if there are any differences or changes as he seems a unhappy, distracted and bored. He asked for some electronic devices to be brought back and I guess I should be pleased. But I am so unsure and I hate that he is there bored and I want him here where I could look after him and spend more time with him as well as give him rest periods with quietness.
He is in a shared room now and this would only add to his depression. I only hope that this is a short term thing and that with some good news from doctors, a connection to the Internet and a healed body, he will bounce back and give me a genuine smile.
Thursday 18 October 2012
Post Number 3 - The Miracle
The day after surgery and we all breathe a sigh of relief. It has been the toughest 24 hours of our lives, but with the overwhelming support from friends and family, we are getting through it.
Yesterday (surgery day) the whole family spent the morning with Mark. Sebastian and I arrived early and Mark seemed in very good spirits. I had spent some quality time with him the evening before and we had some very good conversation. We had both heard some positive stories that day and we were filled with yet more "signs" of hope and that there can be life after brain surgery.
By the time I left the hospital, my nerves and butterflies were gone and we both felt a sense of calm. It was going to be ok, we just knew it and there was no more doubt.
The morning was spent waiting for news. When would he be called in for surgery? When would they prep him for surgery? By 12.30pm, Seb and I just had to leave, although we did not want to. But I had to ensure Sebastian had something to eat and some time to rest and I knew that his family would stay until the time came. As it turned out, the theatre staff came at 1pm and asked why he was not ready for surgery!! Suddenly there was a mad rush to change clothes and put on stockings and race down to theatre! There was no time for tears and lengthy goodbyes, just "see ya later on", and with that he was wheeled away!
Sebastian has been nothing but a pillar of strength, never complaining, never asking why Daddy isn't coming home, never breaking down. He has kept me strong and kept me going. He has been sleeping well day and night, the mental stress obviously tiring him. I have had many people offer to look after him, have him sleep over, but to not have him with me just would not feel right. We need each other more than ever.
The afternoon was spent with family and with sorting out German Costumes! I needed to keep busy and keep my mind focused on something else. Removing the clutter from my family room also gives me a sense of relief as I see my house that has been a total mess for months, slowly start to resemble the home it used to be.
By 5.30pm the family were growing restless. Why haven't we heard anything? Perhaps you should ring! I had been avoiding this but at 5.45pm I made the call and found out he was just about to be moved into recovery. By 6.30pm I had the call from the doctor saying that everything went well and as expected, no nasty surprises. Mark was awake, he knew where he was, what the day was and even the date. He also asked the doctor to call me and told the doctor my mobile phone number!
The news was nothing short of a "Miracle". He really was ok. Tears of joy flowed freely as did a welcome alcoholic beverage. My tears however did not come and still have not. The emotion is there, I feel it's strength. I was sure writing this would open the floodgates but about halfway through writing this I received an IT Support call! A serious IT Support call. It's the kind of helpdesk call you never want to get. "The swim centre's main system is down" and no amount of switching it off and on again will bring it back. Perhaps it's a sign. In order for Mark to live, something else had to die and this PC was the sacrifice to the IT Gods!!
Crazy isn't it? Maybe I am going a little mad! I knew that I would not be able to handle such a situation without the support of my amazing husband, as he is always my calming force and my technical help when things get tough. So I rang Andrew, my Ex and my Ex Business Partner. I told him the situation and he was more than happy to assist and send out an engineer immediately to help me out.
As I look at the time I realise that I just don't have the time or the strength to do the work I wanted to do this morning. The house is so quiet. Sebastian is in Childcare, the dog is playing next door and all I can hear is the clocks tick tick ticking.
I spent last night at Mark's bedside, washing away the signs of the surgery, feeding him ice chips and massaging his legs as they forgot to hookup the machine that was supposed to do this! When I first saw him I was a little taken aback by his big fat lip. He looked like he had just come off the football field! But when he smiled and thanked me so much for being there with him, all I saw was the man I love. He told me he felt "unbelievably good!" He could remember everything. I said, yes, but what about code and the projects you were working on last week. He said, "YES, EVERYTHING!!"
He couldn't believe it and he hoped the surgeon who did the operation would come and see him in the morning so he could shake his hand. Personally I want to hug him and kiss him, but that may be inappropriate!
His observations were being done every half and hour and he was passing them all with flying colours. Motor strength good on both sides, blood pressure slightly high, but that is not a bad thing, he was hungry and asking for food, but had to wait until 11pm. He was so happy, so very tired, but so happy. I can't believe it, I have my husband back.
Thank you, thank you, thank you for all your prayers and thoughts. Clearly if enough people all pray together, miracles do happen. And yes, you can hug me now and tears of happiness will flow. I wish I could thank each and everyone of you reading this. Even if I don't know you, I know that you have played a part in bringing him back to me. I know you will understand if I don't reply to every email, text or letter. This is my way of communicating my gratitude and the way that I can best utilise my time to communicate so that I can get back to the important job of getting my man back on his feet and reuniting him with his amazing son.
We now have to wait for the lab results to come back to see if we are dealing with cancer or not. Whatever the results, we will continue soldiering on, one day at a time.
Yesterday (surgery day) the whole family spent the morning with Mark. Sebastian and I arrived early and Mark seemed in very good spirits. I had spent some quality time with him the evening before and we had some very good conversation. We had both heard some positive stories that day and we were filled with yet more "signs" of hope and that there can be life after brain surgery.
By the time I left the hospital, my nerves and butterflies were gone and we both felt a sense of calm. It was going to be ok, we just knew it and there was no more doubt.
The morning was spent waiting for news. When would he be called in for surgery? When would they prep him for surgery? By 12.30pm, Seb and I just had to leave, although we did not want to. But I had to ensure Sebastian had something to eat and some time to rest and I knew that his family would stay until the time came. As it turned out, the theatre staff came at 1pm and asked why he was not ready for surgery!! Suddenly there was a mad rush to change clothes and put on stockings and race down to theatre! There was no time for tears and lengthy goodbyes, just "see ya later on", and with that he was wheeled away!
Sebastian has been nothing but a pillar of strength, never complaining, never asking why Daddy isn't coming home, never breaking down. He has kept me strong and kept me going. He has been sleeping well day and night, the mental stress obviously tiring him. I have had many people offer to look after him, have him sleep over, but to not have him with me just would not feel right. We need each other more than ever.
The afternoon was spent with family and with sorting out German Costumes! I needed to keep busy and keep my mind focused on something else. Removing the clutter from my family room also gives me a sense of relief as I see my house that has been a total mess for months, slowly start to resemble the home it used to be.
By 5.30pm the family were growing restless. Why haven't we heard anything? Perhaps you should ring! I had been avoiding this but at 5.45pm I made the call and found out he was just about to be moved into recovery. By 6.30pm I had the call from the doctor saying that everything went well and as expected, no nasty surprises. Mark was awake, he knew where he was, what the day was and even the date. He also asked the doctor to call me and told the doctor my mobile phone number!
The news was nothing short of a "Miracle". He really was ok. Tears of joy flowed freely as did a welcome alcoholic beverage. My tears however did not come and still have not. The emotion is there, I feel it's strength. I was sure writing this would open the floodgates but about halfway through writing this I received an IT Support call! A serious IT Support call. It's the kind of helpdesk call you never want to get. "The swim centre's main system is down" and no amount of switching it off and on again will bring it back. Perhaps it's a sign. In order for Mark to live, something else had to die and this PC was the sacrifice to the IT Gods!!
Crazy isn't it? Maybe I am going a little mad! I knew that I would not be able to handle such a situation without the support of my amazing husband, as he is always my calming force and my technical help when things get tough. So I rang Andrew, my Ex and my Ex Business Partner. I told him the situation and he was more than happy to assist and send out an engineer immediately to help me out.
As I look at the time I realise that I just don't have the time or the strength to do the work I wanted to do this morning. The house is so quiet. Sebastian is in Childcare, the dog is playing next door and all I can hear is the clocks tick tick ticking.
I spent last night at Mark's bedside, washing away the signs of the surgery, feeding him ice chips and massaging his legs as they forgot to hookup the machine that was supposed to do this! When I first saw him I was a little taken aback by his big fat lip. He looked like he had just come off the football field! But when he smiled and thanked me so much for being there with him, all I saw was the man I love. He told me he felt "unbelievably good!" He could remember everything. I said, yes, but what about code and the projects you were working on last week. He said, "YES, EVERYTHING!!"
He couldn't believe it and he hoped the surgeon who did the operation would come and see him in the morning so he could shake his hand. Personally I want to hug him and kiss him, but that may be inappropriate!
His observations were being done every half and hour and he was passing them all with flying colours. Motor strength good on both sides, blood pressure slightly high, but that is not a bad thing, he was hungry and asking for food, but had to wait until 11pm. He was so happy, so very tired, but so happy. I can't believe it, I have my husband back.
Thank you, thank you, thank you for all your prayers and thoughts. Clearly if enough people all pray together, miracles do happen. And yes, you can hug me now and tears of happiness will flow. I wish I could thank each and everyone of you reading this. Even if I don't know you, I know that you have played a part in bringing him back to me. I know you will understand if I don't reply to every email, text or letter. This is my way of communicating my gratitude and the way that I can best utilise my time to communicate so that I can get back to the important job of getting my man back on his feet and reuniting him with his amazing son.
We now have to wait for the lab results to come back to see if we are dealing with cancer or not. Whatever the results, we will continue soldiering on, one day at a time.
Tuesday 16 October 2012
Post Number 2 - Processing the Information
It's Wednesday and Mark has now been in hospital 5 days. Not much sleep last night. Stomach tied up in knots. You know that nervous energy you feel just before an important interview or big exam? It usually only lasts a short time, but I have felt this since last night. That feel of panic, utter terrifying panic, but suppressing it due to necessity.
It's funny, you hear of other people going through these types of things and you think to yourself, "I would never be able to cope with that situation" and yet, here I am, doing just that. Taking it one day at a time, organising help, wills, power of eternity etc etc. This is craziness. Utter utter madness. This must be a hideous dream.
Mark and I have always tried to live life with integrity and honesty. Do unto others and you would have them do to you, or however it goes. There have been times when we have done good things for people and they have gone seemingly unnoticed, but then we think, it doesn't matter, because Karma (or God or the Universe) will be sure to look after us. So, Greater Power...it's your turn. Judgement day so to speak. Do we pass? We sure hope so.
Detailed discussions with surgeons today, drove home even harder the seriousness of what we are dealing with here. The words "aggressive", "may never be the same", "high dependency" and "we just don't know" are the kind of words you don't want to hear from the people who are about to open up your husband's great brain. It felt like we were hearing the news all over again for the first time.
But we are helpless. There is nothing more we can do. We have asked all the questions, signed all the consent forms and at this stage, we are looking at surgery tomorrow afternoon. There was talk of waiting a while, letting him come home to have "family time" but just this morning, a simple walk downstairs to get coffee, resulted in him feeling like he was going to have another seizure and him wanting desperately to get back to the safety of his room with medical staff close by. We can't wait any longer.....it's time.
It's funny, you hear of other people going through these types of things and you think to yourself, "I would never be able to cope with that situation" and yet, here I am, doing just that. Taking it one day at a time, organising help, wills, power of eternity etc etc. This is craziness. Utter utter madness. This must be a hideous dream.
Mark and I have always tried to live life with integrity and honesty. Do unto others and you would have them do to you, or however it goes. There have been times when we have done good things for people and they have gone seemingly unnoticed, but then we think, it doesn't matter, because Karma (or God or the Universe) will be sure to look after us. So, Greater Power...it's your turn. Judgement day so to speak. Do we pass? We sure hope so.
Detailed discussions with surgeons today, drove home even harder the seriousness of what we are dealing with here. The words "aggressive", "may never be the same", "high dependency" and "we just don't know" are the kind of words you don't want to hear from the people who are about to open up your husband's great brain. It felt like we were hearing the news all over again for the first time.
But we are helpless. There is nothing more we can do. We have asked all the questions, signed all the consent forms and at this stage, we are looking at surgery tomorrow afternoon. There was talk of waiting a while, letting him come home to have "family time" but just this morning, a simple walk downstairs to get coffee, resulted in him feeling like he was going to have another seizure and him wanting desperately to get back to the safety of his room with medical staff close by. We can't wait any longer.....it's time.
Post Number 1 - The Full Story
I'm starting a new blog.
Will I keep writing regularly? I don't know!
Why am I writing it? Because I have an overwhelming amount of people who love not only me, but my amazing husband. I have so many people asking me "how is he?", "How are you?" "What are the doctors saying?" "Have you had a second opinion?" "How did this happen?" and it goes on an on.
Yes, there are so many people who love my husband, and what's not to love? He is my best friend and has been for many many years. We worked together, fixed server crashes together, bitched about "stupid users" when we worked on helpdesk together, we laughed together, cried together, supported each other through our personal lives, why wouldn't we finally admit to each other (and the world) that we HAD to share our lives together as husband and wife, to hell with the age difference.
Our love then produced the most amazing son who is a carbon copy of both of us. His manorisims, his love for cars, his particularly sensitive nature and the care he takes in all his possessions, yes, he is definitely our son, through and through.
So....what happened I hear you ask. Well, two weekends ago, we were going about our business as normal. Checking out the garden, netting the apricot tree as we excitedly inspected the abundance of fruit that we shall receive this season. Next job was to dig some small holes to cement in Sebastian's Swing set. With the holes dug, Mark gathered the "ingredients" for our cement mix. He was feeling quite thirsty so I told him I would grab a bottle of water for him and wake Sebastian from his afternoon sleep. With Seb awake and another load of washing to hang out, I asked Seb to take the water to his Dad, which he gladly did. Ten minutes later I noticed the empty bottle and when I went to check on Mark he told me he was feeling a little dizzy and a little sick and he was sitting on the garden edging with Seb perched on his lap.
I thought nothing of it and was happily talking away when I looked over and saw him shaking. Quickly I pulled Seb off his lap and Mark moved to the lawn. Within seconds he was having a seizure. I had never seen anything like it and it was horrifying to watch. Luckily, my mobile phone was on the outside bench (which it NEVER IS) and I rang 000 for the first time in my life.
Sebastian looked on in horror and Else occasionally tried to lick him to bring him back, but after a few minutes it stopped and with the assistance of the emergency staff, I was able to keep it together and keep Mark from going into a coma. I rolled him on his side and kept talking to him. He was confused and didn't seem to know who I was. He tried to talk but no words came. I could feel the panic rising inside, but I kept on talking to him and reassuring him and then a word came out that I could understand and I felt a sigh of relieve.
The Ambulance came and they took him away Flinders Hospital. Still in shock I went to a neighbour and had a cup of tea while Sebastian happily played with their three children. A few hours later and I was told that I could come and pick Mark up from the hospital as all tests showed "normal". Still shocked and confused, I gladly brought him home and he tucked Sebastian up in bed. We then spent the evening talking and researching "how on earth did this happen?". No family history or any history of ever having such a thing occur, there had to be a valid reason. Mark being Mark, searched for answers and came to the conclusion that the super fast downing of the bottle of water caused the seizure and we thought, "lesson learned, that was a close call".
The next day Mark was a little tired but in general, he was ok. We went on our business and Mark and Sebastian accompanied me in the afternoon to Else's Dog Trial where he could sit and get fresh air and get some much needed sunshine. The days that followed also seemed pretty normal, with Mark going to work and talk of a management position was considered. Yes, it was life as normal again. Sure, an MRI had been scheduled for 4 weeks time, but we considered this to be just a routine process.
The working week came to an end and it was the weekend again. Nothing too strenuous planned and Mark decided he didn't want to do anything too physical, but a trip to the Hardware shop would be in order. Only 3 minutes up the road from home and he felt the same feelings as the week before. As he was driving, and was in the middle of the road, there was no chance of pulling over. I saw a turning lane in to the Panorama Tafe. I instructed him to pull into this and take the car out of gear which he did and I quickly pulled up the handbrake and put on the hazard lights. I watched him and talked to him, keeping him calm and keeping his breathing as normal as possible. I saw a large break in traffic and knew that I could not get him out of the car safely in the middle of the road. I asked him to put the car in gear and drive straight across the road into the Tafe driveway, which he did. I got him out of the car, sat him on the bark, pulled Sebastian out of the car and rang 000.
This time he did not go into a seizure, but he still felt unwell. This time the ambulance took for ever and I decided to call Emergency back when I saw what I thought was our "help" and I flagged it down, only later finding out that they were just heading back to base, but saw that we needed help and decided to turn around and help us out.
They took him away and this time the emergency department did more tests including a CT Scan. That was when they found something that had the doctors talking. What was this strange little spot on the scan? We were told it looked like a worm or parasite of some sort. Something was causing swelling and excess fluid in the brain. But the doctors were sure it didn't look like a tumor.
That night he was admitted into hospital, with an MRI to be done the next day. But we both felt ok as we had no real diagnosis and if it was a parasite, it would be easily treated and certainly no surgery would be required. I brought Mark many electronic gadgets and car magazines while he put his feet up and enjoyed the quiet time to catchup on reading and podcasts. The only thing missing was a banana lounge and a pina colada!
He had the MRI in the afternoon the next day. But no doctors came to give him a diagnosis. Then they moved him from a normal ward to the Neurosurgery ward, but still no doctors came. I went back to see him that night and he was worried and now I was too. Why had we not received any news? This can't be good.
I decided to go back early next morning as this had been the trend so far that doctors would see their patients first thing in the morning. I was there at 8.30am while Sebastian stayed home to give Oma and Herbert driving lessons with his remote control cars. I stayed til nearly 10am but still no doctors came.
I raced home and took Sebastian to Kindermusik, in order to keep his routine in tact as much as possible, but on the way I received a phone call asking when I could get back to the hospital. I knew this was bad news. We continued on to our music class and after I took him to his "mates" place, where he spent the rest of the day, while I went back to the hospital.
We received confirmation that there was indeed a tumor, but something quite unusual. A team of neurologists had had a meeting that morning, reviewing all the scans and tests over and over and they all agreed that an operation was the only option. What we are dealing with we still do not know, but unfortunately, although the spot is quite small, the grey shadow around the spot is significant. It sits deep in the right frontal lobe of the brain and the only way to remove it, is to remove that part of the brain with the suspect thing in it!
The right frontal lobe controls things such as decision making, personality and moods, some would say a less significant part of the brain, all things considered. But it will make a difference, it has too. Not saying that he cannot make a full recovery, but that may take a very long time. There are many unanswered questions. I bet you are coming up with a dozen questions now, just as we have done while trying to comprehend how we got here. But there are no answers to the questions. Not until it is out and the lab results come back. Only then will we know what the next stage will be.
Am I ok, I hear you ask. Of course not. But I am doing what I need to do to keep going...for we have a son, who needs me to keep it together, and I have a husband, who needs me to be strong and keep things going and I'm not about to let either of them down.
I know you are out there. I feel your love, your support and I hear your tears and I know you hear mine. I don't need you to send me a text or an email, I can feel you. I know that I can ask for your help with anything, and believe me, I will ask you for help. But know that I need to do this my way. I know you want to hug me and tell me you are sorry, but I cannot do this right now. I know you want to ring me or keep me company, but I cannot do this right now.
I am not frightened to ask for help. I have already enlisted help from several people already and you will get your turn. I am keeping food on the table, but my precooked leftovers are running low. I remember when I first came home from hospital after having Sebastian. My amazing neighbours brought casseroles and warm dinners, so I would not have to cook. I will always remember how loved I felt during that time, that people would go out of their way to bring us food so we wouldn't need to eat takeaway meals or worry about cooking.
I know this post is long and I know some of you already know the story. But this helps me to talk to you and tell you everything I know and it means I don't have to repeat myself over and over which I am finding very tiring. Everyday that Mark is not home Sebastian grows a little sadder. He has been so very good but I know he is hurting. He plays and laughs with his friends, but once everyone goes home, I can see the pain in his eyes and this is the hardest part for me and Mark to deal with.
Tonight I told him that we will go and see Daddy tomorrow after swimming. I told him that sometimes we cry when we are sad, but sometimes when we are so very happy, we also cry and that Daddy might cry tomorrow, not because he is sad, but because he will be so happy to see him.
I love you all and thank you for reading my story. I promise you I will keep you up to date, I promise I will ask you for help when I need it and I promise to look after myself and keep the wheels turning.
Til next blog......Goodnight all
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Will I keep writing regularly? I don't know!
Why am I writing it? Because I have an overwhelming amount of people who love not only me, but my amazing husband. I have so many people asking me "how is he?", "How are you?" "What are the doctors saying?" "Have you had a second opinion?" "How did this happen?" and it goes on an on.
Yes, there are so many people who love my husband, and what's not to love? He is my best friend and has been for many many years. We worked together, fixed server crashes together, bitched about "stupid users" when we worked on helpdesk together, we laughed together, cried together, supported each other through our personal lives, why wouldn't we finally admit to each other (and the world) that we HAD to share our lives together as husband and wife, to hell with the age difference.
Our love then produced the most amazing son who is a carbon copy of both of us. His manorisims, his love for cars, his particularly sensitive nature and the care he takes in all his possessions, yes, he is definitely our son, through and through.
So....what happened I hear you ask. Well, two weekends ago, we were going about our business as normal. Checking out the garden, netting the apricot tree as we excitedly inspected the abundance of fruit that we shall receive this season. Next job was to dig some small holes to cement in Sebastian's Swing set. With the holes dug, Mark gathered the "ingredients" for our cement mix. He was feeling quite thirsty so I told him I would grab a bottle of water for him and wake Sebastian from his afternoon sleep. With Seb awake and another load of washing to hang out, I asked Seb to take the water to his Dad, which he gladly did. Ten minutes later I noticed the empty bottle and when I went to check on Mark he told me he was feeling a little dizzy and a little sick and he was sitting on the garden edging with Seb perched on his lap.
I thought nothing of it and was happily talking away when I looked over and saw him shaking. Quickly I pulled Seb off his lap and Mark moved to the lawn. Within seconds he was having a seizure. I had never seen anything like it and it was horrifying to watch. Luckily, my mobile phone was on the outside bench (which it NEVER IS) and I rang 000 for the first time in my life.
Sebastian looked on in horror and Else occasionally tried to lick him to bring him back, but after a few minutes it stopped and with the assistance of the emergency staff, I was able to keep it together and keep Mark from going into a coma. I rolled him on his side and kept talking to him. He was confused and didn't seem to know who I was. He tried to talk but no words came. I could feel the panic rising inside, but I kept on talking to him and reassuring him and then a word came out that I could understand and I felt a sigh of relieve.
The Ambulance came and they took him away Flinders Hospital. Still in shock I went to a neighbour and had a cup of tea while Sebastian happily played with their three children. A few hours later and I was told that I could come and pick Mark up from the hospital as all tests showed "normal". Still shocked and confused, I gladly brought him home and he tucked Sebastian up in bed. We then spent the evening talking and researching "how on earth did this happen?". No family history or any history of ever having such a thing occur, there had to be a valid reason. Mark being Mark, searched for answers and came to the conclusion that the super fast downing of the bottle of water caused the seizure and we thought, "lesson learned, that was a close call".
The next day Mark was a little tired but in general, he was ok. We went on our business and Mark and Sebastian accompanied me in the afternoon to Else's Dog Trial where he could sit and get fresh air and get some much needed sunshine. The days that followed also seemed pretty normal, with Mark going to work and talk of a management position was considered. Yes, it was life as normal again. Sure, an MRI had been scheduled for 4 weeks time, but we considered this to be just a routine process.
The working week came to an end and it was the weekend again. Nothing too strenuous planned and Mark decided he didn't want to do anything too physical, but a trip to the Hardware shop would be in order. Only 3 minutes up the road from home and he felt the same feelings as the week before. As he was driving, and was in the middle of the road, there was no chance of pulling over. I saw a turning lane in to the Panorama Tafe. I instructed him to pull into this and take the car out of gear which he did and I quickly pulled up the handbrake and put on the hazard lights. I watched him and talked to him, keeping him calm and keeping his breathing as normal as possible. I saw a large break in traffic and knew that I could not get him out of the car safely in the middle of the road. I asked him to put the car in gear and drive straight across the road into the Tafe driveway, which he did. I got him out of the car, sat him on the bark, pulled Sebastian out of the car and rang 000.
This time he did not go into a seizure, but he still felt unwell. This time the ambulance took for ever and I decided to call Emergency back when I saw what I thought was our "help" and I flagged it down, only later finding out that they were just heading back to base, but saw that we needed help and decided to turn around and help us out.
They took him away and this time the emergency department did more tests including a CT Scan. That was when they found something that had the doctors talking. What was this strange little spot on the scan? We were told it looked like a worm or parasite of some sort. Something was causing swelling and excess fluid in the brain. But the doctors were sure it didn't look like a tumor.
That night he was admitted into hospital, with an MRI to be done the next day. But we both felt ok as we had no real diagnosis and if it was a parasite, it would be easily treated and certainly no surgery would be required. I brought Mark many electronic gadgets and car magazines while he put his feet up and enjoyed the quiet time to catchup on reading and podcasts. The only thing missing was a banana lounge and a pina colada!
He had the MRI in the afternoon the next day. But no doctors came to give him a diagnosis. Then they moved him from a normal ward to the Neurosurgery ward, but still no doctors came. I went back to see him that night and he was worried and now I was too. Why had we not received any news? This can't be good.
I decided to go back early next morning as this had been the trend so far that doctors would see their patients first thing in the morning. I was there at 8.30am while Sebastian stayed home to give Oma and Herbert driving lessons with his remote control cars. I stayed til nearly 10am but still no doctors came.
I raced home and took Sebastian to Kindermusik, in order to keep his routine in tact as much as possible, but on the way I received a phone call asking when I could get back to the hospital. I knew this was bad news. We continued on to our music class and after I took him to his "mates" place, where he spent the rest of the day, while I went back to the hospital.
We received confirmation that there was indeed a tumor, but something quite unusual. A team of neurologists had had a meeting that morning, reviewing all the scans and tests over and over and they all agreed that an operation was the only option. What we are dealing with we still do not know, but unfortunately, although the spot is quite small, the grey shadow around the spot is significant. It sits deep in the right frontal lobe of the brain and the only way to remove it, is to remove that part of the brain with the suspect thing in it!
The right frontal lobe controls things such as decision making, personality and moods, some would say a less significant part of the brain, all things considered. But it will make a difference, it has too. Not saying that he cannot make a full recovery, but that may take a very long time. There are many unanswered questions. I bet you are coming up with a dozen questions now, just as we have done while trying to comprehend how we got here. But there are no answers to the questions. Not until it is out and the lab results come back. Only then will we know what the next stage will be.
Am I ok, I hear you ask. Of course not. But I am doing what I need to do to keep going...for we have a son, who needs me to keep it together, and I have a husband, who needs me to be strong and keep things going and I'm not about to let either of them down.
I know you are out there. I feel your love, your support and I hear your tears and I know you hear mine. I don't need you to send me a text or an email, I can feel you. I know that I can ask for your help with anything, and believe me, I will ask you for help. But know that I need to do this my way. I know you want to hug me and tell me you are sorry, but I cannot do this right now. I know you want to ring me or keep me company, but I cannot do this right now.
I am not frightened to ask for help. I have already enlisted help from several people already and you will get your turn. I am keeping food on the table, but my precooked leftovers are running low. I remember when I first came home from hospital after having Sebastian. My amazing neighbours brought casseroles and warm dinners, so I would not have to cook. I will always remember how loved I felt during that time, that people would go out of their way to bring us food so we wouldn't need to eat takeaway meals or worry about cooking.
I know this post is long and I know some of you already know the story. But this helps me to talk to you and tell you everything I know and it means I don't have to repeat myself over and over which I am finding very tiring. Everyday that Mark is not home Sebastian grows a little sadder. He has been so very good but I know he is hurting. He plays and laughs with his friends, but once everyone goes home, I can see the pain in his eyes and this is the hardest part for me and Mark to deal with.
Tonight I told him that we will go and see Daddy tomorrow after swimming. I told him that sometimes we cry when we are sad, but sometimes when we are so very happy, we also cry and that Daddy might cry tomorrow, not because he is sad, but because he will be so happy to see him.
I love you all and thank you for reading my story. I promise you I will keep you up to date, I promise I will ask you for help when I need it and I promise to look after myself and keep the wheels turning.
Til next blog......Goodnight all
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